I’m going for a 2nd Opinion to by different consultants, at first my old consultant said I had a severe Decompensated Liver and I may not live long enough to even get a transplant, so she didn’t put me on list she wanted me to get stronger. I got stronger, then she said after 2 months she still wasn’t going to put me on list, cause I was too well! So I don’t trust her now hence getting the 2nd opinion, does anyone have any key questions I should ask the new consultant?
He has all my old scans and info from the other hospital
Thanks in advance
Harriet
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Harriet-sarah
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No single doctor or consultant can add someone to an organ transplant waiting list. Normally a person is referred to one of the specialist liver transplants specialist centres around the country. These are:
• London – Royal Free Hospital and King's College Hospital.
• Birmingham – Queen Elizabeth Hospital (adults)
• Leeds – St James's University Hospital.
• Newcastle – Freeman Hospital.
• Cambridge – Addenbrooke's Hospital.
• Edinburgh Royal Infirmary.
No single person can decide if a patient should be added to this list. This is carried out by a specialist team of people. Normally the panel is made up of five to six people. Along with the surgeon, there is an anaesthetist, and mental health doctor/nurse. Each person needs to know that you are fit enough to endure a five/six-hour operation. The mental health staff will need to be convinced that there are no underlying issues, i.e. suicide, drug or alcohol abuse, etc.
This assessment consists of an overnight stay in the hospital where you are physically tested, and your heart rate checked, (this might include going on a treadmill). Your lung capacity and bloods will be checked.
Everyone in this team needs to be sure that a transplant is in your best interests and that you have adequate aftercare available at home.
It may take the panel up to three to four days to decide if a person is a suitable candidate.
No single person decides who shall be put forward.
Ask your consultant if they will refer you to one of these specialist liver centres, if they refuse, ask for the reason for this refusal to be noted on your medical records and stating the reason why.
hi that’s my problem I have 1 gastro consultant saying yes then no just to refer me to a specialist team, and I can’t count on that singles person point of view not to at least get me assessed, I’m very confused. I’ll post later after I’ve had my 2nd opinion and let you all know the out come, thank you both of you for your responses x
Many thanks for that, I really think you need to be referred to a hepatologist. I have found that Hepatologist's do have a great understanding of liver related conditions,
Ask to be referred to a hepatologist, if this request is refused, then go back to your GP and ask them to refer you to one. GP's can get authorisation to refer to a specialised centre outside of their catchment area. Explain that you know have two ongoing issues, your liver condition, and now your mental health is suffering due to you not knowing what is happening, or where to turn.
well, I’ve see the consultant and he agrees I have the right to at least see the team, he was overall extremely impressed how I looked compared to a year ago. And said most patients he sees as bad as I were would not have survived, he said what saved my life was the mental health and alcohol support I was getting and my sheer determination. He could not answer if I would be be better off with a transplant or not, and that should be Queens transplant team to decide that. I said my other consultant wouldn’t refer me I had to plead her to refer me! And he went along the same as kinda what you were saying about not 1 person should decide, I I deserve to have a transplant team to decide it. Talked about the pros and cons, and he said I have done leaps and bounds and there is a risk of feeling permanently worse if I have a transplant cause it comes with its own set of problems in itself, which I get. So I just have to wait another couple of months now until Queens see me and go from there. But getting this second opinion has settled my mental health somewhat. So fingers crossed for the future, hopefully!
be careful running off to get a transplant, it is not a cure, but swapping one set of issues for a hopefully much lesser set of issues that make it beneficial. I had to have one as I would have definitely died without it, but if I had the choice, I’d have waited and been content with being well enough to not need one.
hi Ubwa, yes that’s exactly what I don’t want cause you are swapping one set of issues for other ones, I just needed the 2 opinion so I can also mental cope with the decisions made for me. It’s been a hell of an emotional rollercoaster as I’m sure you would understand. For me it is life expectancy/symptoms/possibilities. I would too like nothing more then to just long term get better, over a transplant any day, but with them telling me I may not even survive transplant waiting list I fought I was fighting for nothing. But after today and speaking with my original consultant I feel there is a strong chance of survival without a transplant (he was really surprised to see me as he really thought I wouldn’t survive, but I told him I faced death many times and looked death right in its eyes, and survived. I’m a fighter if I can get through what I’ve been going through over the last 5 years I can get through anything. I feel so much more better having the conversation with him. But he did say it’s only the transplant team that can decide if you need one or not, and I have now been referred to Queens, he said I may not need one right now but it maybe fore years to come, I can fight this I know I can x
Good luck to you. You have a great mental attitude! XX
I would definitely go for a second opinion, one person can negatively influence the whole process and it is sometimes important to have a different consultant with a different liver team review your case.
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